Wednesday, May 30, 2012

A boy with cerebral palsy runs a race—and his classmates show what inclusion means


Yes, I am wowed by this boy, Matt W. of Worthington, Ohio, running the 400 meter at his school's Field Day. I know how much effort and energy it takes to move your muscles like that when you have cerebral palsy; Matt had actually been given the option to sit out the race. Still, I am not astounded. As Max's mom, I know full well that kids with disabilities can have supersonic determination to overcome physical challenges. Matt is yet another kid with special needs who kicks butt. 

I am absolutely floored by his classmates; what happened seems like the kind of thing you only see in movies. That's the part that had me sobbing. To me, these kids deserve props for their team spirit, not for being "kind" (as a caption in the video says). That word implies that the recipient is needy or pitiful. And yes, I am very, very prickly about not wanting kids like Max to be pitied. I'd like my son to be accepted

This is inclusion at its best, what I dream of for Max.

What it's like to have two kids with cystic fibrosis


How does the other half live? Before I had a kid with special needs, I had no idea. Even now, I’m still constantly learning about conditions and diseases that affect children (and adults). Most recently, I got a better understanding of cystic fibrosis (CF) from a parent who has two children with the disease. Brenda Fox is mom to Lucas, 9, and Hannah, 6. She works as a store manager for CVS/pharmacy in Indiana, and I met her through work I’ve been doing with CVS Caremark All Kids Can.

Brenda is co-chair of a new CVS/pharmacy in-store and online fundraising campaign, Advancing Medical Research, to support research to improve the lives of people living with cystic fibrosis and amyotrophic lateral sclerosis. It’s a national effort that’ll run through June 30. Also: May is Cystic Fibrosis Awareness Month. Once you read what Brenda has to say, you’ll understand why funding new research is so important to her and the 30,000 children and adults in the U.S. affected with CF. I asked her to explain the things that people don’t get about the disease.

Cystic fibrosis is a disease, not a condition
“A lot of people don’t understand what CF is. It’s a genetic disease of the mucus and sweat glands. I didn’t know much about it myself. Then when Hannah was two and a half, she had a really bad chronic cough. She’d go on and off antibiotics—our pediatrician was just treating the symptoms. We ended up at the allergist, and he knew right away that she had it from the way she looked—very skinny, belly kind of protruding—to the fact that she had loose bowels. The way they check for CF is to see if there are elevated levels of salt chloride in the body. Within 24 hours, we got a call that she’d tested positive. My husband and I were completely devastated; we went right to the negative, and I read all the bad things. You and your partner both have to be carriers for a child to get CF. We realized we needed to get Lucas tested too. Within a six-week time span, we’d gotten the next phone call. The life expectancy for people with CF is 37 years old, which was my age at the time the kids were diagnosed. I couldn’t believe this was happening—it was like a bad dream.


Living with CF means daily therapy
People who get CF produce a lot of mucus, which gets into their lungs and makes it hard to breathe. It can hurt my kids to take a deep breath. It can also block their pancreas, so food can bypass that and come straight out and their body doesn’t absorb the nutrients it needs. My kids take 15 to 25 pills a day to break up the mucus—four at every meal, and two with snacks. They also do Vest therapy every day, a machine that pounds their chests for a half-hour to break up the mucus. They each have their own vest and they do it every evening. It doesn’t hurt and they’re used to it—Hannah falls asleep on hers!

CF can impact fertility
Lucas will never have children because he’s sterile from the CF. When our pulmonologist told me that, I was heartbroken, though she said that someday there might be help. Hannah could have kids but has a higher risk of having a child with birth defects. We pray for treatments.

It’s not that I’m not feeding my kids!
The majority of kids with CF are thin. Mine down 3000 to 5000 calories a day. We eat McDonald’s three to four times a week! It’s not bad for my kids. They also do nutrients and protein bars. 

We don’t put our kids in bubbles
My kids are typical kids in many ways—they both love to hang out with friends and play soccer, and Hannah’s in gymnastics. When I tell people they have CF, sometimes they say  “Are you sure? They look so healthy!”

States are now screening babies for CF
We don’t know if anyone on either side of our family has CF; my dad is adopted, so it could be on his side. Hannah was born after it became law to do newborn screening. If they catch it early on, the therapies can start early on.

Sometimes, it gets hard for parents
We have a great neighborhood and everyone understands about the kids, but when their friends come over they’ll ask, “What is that thing?” and point to the Vest machine, or “What are those pills?” We’re always explaining and educating friends and neighbors. I try not to think about the long-term. I’m not supposed to live longer than my kids; they should live longer than me. I try to focus on their daily lives. 

There’s major hope for a cure
There are more than 2000 types of the CF gene. Most recently, the FDA approved a miracle drug for the least common one, the G551D mutation. It’s a pill known as blue lightning. Some CF-ers on the pill have an increase in lung function and weight gain. Now they’re in the process of trialing that medication for the 508 gene, the most common one that both my kids have. We are so close to a cure! The hope is that it will happen by 2016. Every year that goes by, a CF patient’s lung function decreases. Lucas and Hannah’s lung function is great—we are so adamant about doing their therapies. We don’t want them to have to get lung transplants. 

We just participated in the Cystic Fibrosis Foundation Great Strides Walk. Our team raised $10,000, which will go toward research. I’m on the committee for the walk. I wish more people would get involved with CFF chapters. It’s so good for familes to realize they’re not the only one out there. And it’s heartening to take action—I’m doing something for my kids. They know that mom and dad are fighting for them. 


This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to helping children of all abilities be the best they can be. Like them on Facebook!

Tuesday, May 29, 2012

Eat, play, roll, sleep, repeat: weekend fun and drama


Eat, play, roll, sleep, repeat: That just about sums up our weekend, where we relaxed, built sand castles, pigged out and I had a mini Max discipline crisis over a baggage cart.

We were down at the Jersey shore, in the Cape May area. It's a beautiful spot filled with families, a boardwalk, cute stores, great restaurants, lots of mini golf and ice-cream and plenty to do. My sister, Judy, and her family came, too (Max still loves to call her Judy Doodie, my preferred name for her from childhood). The days fell into that familiar beach rhythm: breakfast, swim, lunch, swim, shower, dinner, boardwalk fun.

Sabrina in training to become Thumb Wrestling Champ of the world.

Requisite stunning sunset 

One night, we conned Judy into babysitting (OK, we just asked nicely) and Dave and I headed to the famed Ebbitt Room in Cape May, at The Virginia Hotel. It was elegant (but in a chill sort of way), romantic and amazingly delicious. Much of the produce and inspiration for dishes comes from the hotel's Beach Plum Farm, so even The Lettuce salad with a variety of greens and pickled carrots is simply wonderful. I don't think I've ever tasted flounder so good, and all the chef did was rub it with pepper and salt (he's into sea salt, even in the butter—OMG).

Gourmet deviled eggs with caviar, salmon and prosciutto = new addiction

Sabrina and I had some nice alone time; we like to wake up early and collect shells on the beach. Dave, Max and my brother-in-law and niece headed to the zoo one afternoon, and Max gave them the grand tour—he's been there a lot and when he's comfortable someplace, he's in peak form. The challenge of the weekend: the baggage carts at the place where we stay. Max loves to wheel those babies around, and anytime he can get his hands on one he will roll it to his heart's content. As you can imagine, this has made us very popular in hotels. 

This time, Max wanted to wheel the luggage cart around the garage, a sprawling space beneath the building. What the heck, Dave figured; he could do it once. But then Max wanted to go again and again; he kept doing this circular motion with his hand and saying "Eeese!" ("Please!"). When Dave said "No! I can't do it anymore, I'm allergic to it!" Max didn't believe him one bit.

Please? Pretty please? 

Max has loved to push things around since forever. When he was learning to walk, he'd push around a play shopping cart loaded with cans to weigh it down so it would give him support. Even today, he'll happily wheel around toy strollers when we visit friends' with younger kids. Going to the supermarket and pushing the cart is one of his favorite activities ever.

So this wasn't surprising, exactly, except that he kept insisting on going around the garage. Not exactly the fresh-air experience I wanted Max to enjoy at the beach, or the sort of thing I'd be proud to program into the Weekend Activities category on his speech app, to share with his class. Also: baggage carts aren't toys. The biggest issue at hand, though, was whether or not to give in to this quirk. It's something I struggle with a lot, as happened with Max's purple-centric birthday party.

But making like Mario Andretti with the baggage cart is Max's idea of a good time, same as thumb wrestling is for Sabrina. And we were on vacation. And so I partially caved, and I was very clear about limits. "Max, we can go around once a day, and that's it," I told him. He agreed, and that's what we did. Although when a handyman stopped by our house one afternoon, Max made that round-and-round motion and looked hopefully at the guy–he wanted him to accompany him on a spin around the garage.

So now I am amazingly familiar with the interior of the garage, Max is more adept than ever at steering luggage carts, and we all had a generally great long weekend. As I write, we're driving home in the dark and Max has been happily babbling away in the back seat for an hour now. It's a beautiful sound.

Friday, May 25, 2012

Camps for kids with special needs: Max is doing two!


Max's summer plans are set: He's returning to the one-week camp for kids with special needs that he went to last year, and loved. I'm particularly excited about the inclusive day camp he'll also be attending. He's going to miss two weeks of his school summer program, but Dave and I decided it was worth it—both for the inclusionary experience and for fun.

I was so psyched to find this program, because they're rare. While it's possible to work out an arrangement with a local day camp, several told me I'd need provide the aide and I wasn't sure I could find someone great. A couple of times, the fact that Max isn't full potty-trained was non-negotiable. This camp provides a "shadow" who will help with caregiving and keep an eye on Max, but she'll seem like just another counselor to other kids. This camp is really bent on making sure kids with special needs seamlessly fit in.

I got to meet Max's shadow this week at a pre-camp meeting. She's a college sophomore studying neuroscience who has childcare experience, and she seemed all kinds of awesome. I gave her the rundown on Max's likes and dislikes, gushed about how social he is, promised her she'd fall in love with him. I've already asked the director I can also shadow/spy on Max at some point when he's there; I'm so eager to see how things are going to go.

At the meeting, all parents were asked to fill out a "Hopes and Dreams" sheet. I wrote, "Max has never participated in an inclusive program before. What I most want is for him to have fun playing with other kids, interact with them and communicate with them—and for them to do it right back."

Below, some resources for finding local camps for kids with special needs. There might still be spots open but if not, at least you can scout ones for next summer.

Very Special Camps lists camps and programs for people with special needs around the country; you can browse by disability or by state.

KidsCamps.com also lists camps by state and specifies the types of disabilities accommodated.

My Summer Camps lists camps by disability, which you can then filter by state.

Easter Seals Disability Services has 140 accessible camps around the country—for adults, too.

Family Village has a lengthy list of camps and programs nationwide.

Therapy/Respite Camps for Kids has a list divvied up by region.

Cristo Vive International provides camp programs for children with disabilities around the world; there are a few locations in this country.

Foundation For Jewish Camp has a list of camps for Jewish children with special needs.


Photo/Peter Blanchard

Thursday, May 24, 2012

Could an ER handle your child? Are you sure?


The seizure started around 6:45 a.m. Max had crashed in bed with me and Dave; I woke up when he did. I felt the heat radiating through his pajamas—Max had a major fever. I jumped up to grab a thermometer, and that's when I saw one of his feet start to twitch. In a heartbeat, I knew what was happening.

"DAVE!" I screamed. "LOOK."

Dave woke up and saw. And then, suddenly, Max's entire body was shaking. I started crying as I dialed 911. "My child is having a seizure," I shouted to the woman on the other end of the line.

I remember Dave carrying Max downstairs and laying him on the sofa in our living room. I bent over and kept saying "Max, Max, Max." His eyes were rolled up, and he did not respond. Max was two years old at the time but to this day, I have flashbacks when I sit on that sofa.

Two policemen showed up; the ambulance took what seemed like forever to arrive. The paramedics couldn't stop the seizure in our 10-minute drive to the hospital. In the ER, the doctor asked for a history as Max lay on a gurney, naked except for his diaper, shaking nonstop. The doctor told us that the seizure medication wasn't working, and asked for the number of our pediatric neurologist to confer with him.

Max's seizure, a grand mal, lasted close to an hour. Despite the hell I'd been through during Max's two-week stay in the NICU, I think that hour counts as the worst one of my life.

I thought we were losing Max.

That was the only major interaction I've had with an ER since Max was born; he had one other seizure at age 5, but it stopped within two minutes. After that, our neuro upped his medication, and he's been fine since then. We were lucky; neither seizure had lasting effects.

To this day, I have no idea whether that doctor would have been able to stop Max's seizure sooner if he had better training in pediatric care. There's a chance he didn't, as I've learned from the R Baby Foundation. The nonprofit is devoted to improving pediatric emergency room care; 1 in 5 children will make one or more visit visit to an emergency department this year. After my friend Rebecca invited me to attend a fifth-anniversary gala, I read up on the work R Baby does—and I was shocked by some of the facts.
 
Scary stat #1: 1 in 141 babies dies every year in the United States. That's 30,000 babies who will die before their 1st birthday.

Scary stat #2: How quickly and accurately routine illnesses and emergencies are treated can mean the difference between life and death. The majority of emergency departments (EDs) are not prepared to handle babies and children. Children make up 27 percent of all emergency department visits, but only 6 percent of EDs in the US have the necessary supplies for pediatric emergencies.

Scary stat #3: A pediatric Emergency Department should be the safest for a child who needs urgent care, because it's supposed to have specially-trained doctors. However, there are no uniform standards for Pediatric Emergency Rooms; the ones around the country have varying degrees of trained specialists and equipment readiness. R Baby is advocating for a clear definition of Pediatric Emergency Rooms on a leveled system, similar to Trauma Centers; they also fund hospital programs around the country and educate parents.

If this doesn't unnerve you, the story of R Baby's founders, Phyllis and Andrew Rabinowitz, will. Back in 2006 they had a baby, Rebecca, born four weeks early. She came home from the NICU, seemingly healthy. When she got seriously congested, during repeated visits to the local ER the couple were told she had a common cold.


Rebecca passed away on the morning of July 21. Her parents later found out she'd contracted an enteroviral infection that can be life-treathening to babies. As they write, "Had her symptoms been treated, she may still be here today."
 
We're headed into "trauma season"—summer is the most dangerous time of years for kids, according to a study by the National Safe KIDS Campaign. Nearly half of all unintentional, injury-related deaths happen during summer months.

What you can do to keep your child safe:

• Ask your pediatrician which hospital he/she is affiliated with. Find out whether or not this is a pediatric ER, and what the local ER recommendations are. In case of an emergency, calling 911 or the closest ER (general or pediatric) is the best choice.

• Read up on Emergency Room Resources at R Baby; you can download info on how to know when to take a baby to the ER, what to expect when you arrive there, and items and information to have on hand.

• Share this information with babysitters, nannies and other caregivers in your child's life.

Simple ways to make ERs safer for children everywhere:

Sign the petition to improve pediatric emergency care.

Share your ER story to help inform other parents.

• Shop to help: For every Glassybaby Precious candle set sold, 10 percent benefits the R Baby Foundation.

The R Baby Gala was held at The Plaza Hotel, an elegant night with gourmet bites from five-star chefs and women in beautiful dresses. I was proud to see Julia Beck, founder & CEO of Forty Weeks, receive the R Baby Champion Award. The silent auction and other efforts pulled in some $1.25 million for the foundation.

But there was a terrible truth beneath that glamorous night: Our children are not safe. It's reassuring to know The R Baby Foundation is working hard to change that.


Top image/Dora Jacobs and the Stump-Coales

Wednesday, May 23, 2012

Maxsutawney Phyllis and other creatures we're hanging with


We've had a bunch of freaky nature things happen at our house in the last couple of years. Maybe this is par for the course when you live in suburbia. What do I know, I grew up in Brooklyn, New York where the main form of wildlife cracked gum loudly and had big hair.

One summer, we had a bunch of dead birds around the house. Last July, a Justin-Bieber-loving squirrel strolled into our living room. It's beginning to look like another exciting Wild Kingdom season round here because of the neighbors we've recently discovered.

Perhaps you recall our pet groundhog, named Maxsutawney Phil. Maxsutawney made a return a couple of months ago. "Man, he's getting old!" Dave said. "He's got a pooch and gray hair."

And then on Mother's Day, we spotted Maxustawney Phil... and two baby groundhogs. Yep, she's Maxsutawney Phyllis. (Word to Felicia: you called it last year!) The babies are adorable; Sabrina says they're twins. They come out early in the morning for breakfast (grass) and in the early evening for more. In between, I'm guessing they hit Whole Foods.

Saturday, I was out running errands; when I walked in the door Sabrina said, "Mommy, we have bees!" She, Max and Dave had been sitting on our deck when Max pointed at something. It was a swarm of bees. Dave dashed over to our next door neighbor's house for advice. "Don't worry about it!" Mr. W. said. "They'll move on."

They looked like this, but there were a lot more

Dubious, Dave called an exterminator, who said it was illegal to exterminate them and suggested he call our state's Beekeepers Association. Dave left a message; by the time the guy called back a few hours, the bees had settled in a hole in the gigantic oak tree on the side of our house. "They won't sting you," said the man on the phone, "and they're good for the tree." I'm going to assume the bees got a great rate on a mortgage.

So we're going to be hanging with bees and groundhogs this summer. Anyone want to come over?


This week's Babble post: 20 Not-Obvious Photos Every Parent Should Take

Photo/whiteoakart

Tuesday, May 22, 2012

How your money personality affects planning for your child's future


Dave and I have been going through the process of planning for Max's financial future and let me just say, gathering the documents has been the most fun thing I've done in forever! Um, OK, not. Happily, after we got through that all we've had to do is sit back, talk and listen.

Among the stuff we had to collect:

• Statements from savings, retirement and investment accounts
• Property insurance summary pages
• Life insurance statements
• Two years of tax returns
• Social security and pension statements
• Wills

Given that my filing system consists of tossing statements into a fabric tote in a closet, and Dave doesn't even have a filing system, it's taken us awhile to get stuff together. So if you're going to start financial planning in the near future (and paperwork organization is not one of your talents), my advice is to get a big folder and start putting statements in there.

Through the series of sponsored posts I'm doing with Massachusetts Mutual Life Insurance Company (MassMutual) and their national SpecialCare program, I've been meeting with financial advisors Sal Salvo and Michael MacDougal of MassMutual's general agency Summit Marketing Inc. In our first meeting, Dave and I were asked to list our priorities about planning for Max in order of importance. We had different takes but in the end, we're both clear on the fact that before you can start making a plan for your child with special needs, you need to make sure you have your own plan in place.

Our next meeting with the team was all about the meaning of money—a look at my perceptions and Dave's toward our finances. In order for a financial planner to come up with a plan for you, he ideally needs to know both partners' take on money and their history with it. As Sal said, "Everyone has a relationship with money that's as different as a fingerprint."

We'd been sent the questions in advance to ponder. Then Sal took turns asking Dave and me questions as he recorded it. We're going to have the CDs to save for posterity. Sal showed us the CD he keeps on his desk of him and his father talking. Now that his dad is ailing and unable to talk, he told us, it's one of his most valuable possessions.

I'd given some thought to the questions, but as I spoke I found myself talking about things I'd never really voiced, like how grateful I was to my dad for teaching me about saving. Dave and I laughed as I recalled my first paid job (counselor in training, for which I received 50 whole bucks for the summer!) and how, when I met him, Dave's banking system consisted of a Post-it note on his bedroom wall that listed the rent he owed and the amount in his checking account. We both agreed on what money means to us: freedom. Freedom to make sure our our kids are taken care of without worry, freedom to enjoy life's pleasures, freedom to live life on our terms.

During the meeting, one important thing came up: Dave and I need to decide on a back-up guardian for the kids, in case the unthinkable happens to us. We already have a designated guardian in place but, as it turns out, you also need a back-up guardian to the guardian. I'm considering asking Bill Gates. But, for real, we'll pick a family member.

Below, the financial questions we discussed. Even if you're visiting a financial professional soon, they can help you firm up some goals with your husband—and learn a little more about the person you thought you knew everything about.

THE MEANING OF MONEY CONVERSATION

Early learning

1. In what kind of financial circumstances did your parents grow up?
2. In what kind of financial circumstances did you grow up, and how do you think that affected how you think about money?
3. What are some of your earliest memories about money?

Decisions about money

1. What was the best financial decision you ever made? What was the worst?
2. What are some of the guiding principals and philosophies you try to follow with money?
3. In what ways are your attitudes about money different from your partner's?

What money means

1. What does your money represent to you?
2. What do you most appreciate about money?
3. What concerns or fears do you have about money?

Looking ahead

1. Looking ahead, what worries do you have about your financial future?
2. What advice about money would you like to pass on to your children, grandchildren and others who will follow you?
3. If your money could solve one problem or issue in the world, what issue would that be? Why is solving that problem or issue important to you?

If you care to, share: What does money mean to you?

This is one of a series of posts sponsored by MassMutual, for which I received compensation. SpecialCare is an exclusive MassMutual program that provides access to information, specialists and financial products and services.



istock/hocus-focus

Monday, May 21, 2012

Stop in the name of love, before you break my heart



Thursday was the school Spring Concert at Max's school. He had great success at the last one, and I'd heard through the teacher grapevine he was doing well at rehearsals. The theme: oldie songs.

This was Max's debut at the keyboard. At the last concert, some kids in his class had played; my inner stage-mom came out and I thought, Max could do that! Most of all, I thought it would be good for him both in terms of fine-motor skills and boosting his confidence. So I asked if he could join the keyboard club, and he's been loving it. 

At the concert, first Max played a scale and then, he played that famous rock 'n roll song Hot Cross Buns. His dexterity is getting so much better; two years ago at this time, he wouldn't have been able to isolate his pointer finger to play the keys. 


It was maybe my most favorite performance ever, coming in just above every Springsteen concert I've seen. Max kept shaking his head at me because he was embarrassed that I was taping him.

After his stellar performance Max was mobbed by girls screaming for his autograph. Oh, OK, it was just me squealing... and Max shaking his head at me to stop.

Later on, Max's class performed Stop! In the Name of Love and Proud Mary. Max was happy but so overwhelmed by the big crowd that he forgot to actually sing or do the hand motions. Me, I started pointing my finger to my head when "Think it over" came on and placing my hand over my heart for "In the name of love,"which Max thought was really funny.




When he was done, he ran right into my arms. And I did my best not to lose it from the happiness.

Saturday, May 19, 2012

3 signs you're getting old

Sign #1: The other day, you saw the Harvard baseball players lip-synching to Call Me Maybe on the Today show. When you watch the viral video on YouTube, your 7-year-old thinks it's SO funny that Mommy is watching that. She's known the song for months.  


Sign #2: You think the guys are cute but what most excites you is that their YouTube channel supports Friends of Jaclyn Foundation, a non-profit dedicated to improving the lives of kids with brain tumors.

Sign #3: You start fantasizing about organizing a dance flash mob to the song. On your commuter train.

Friday, May 18, 2012

My amazing Max meets The Amazing Max and magic happens


The invite came months ago: Would I like to take the kids to see The Amazing Max And The Box of Interesting Things? It's a one-man show in New York City with magician Max Darwin, a popular performer who's hosted a show on Nickelodeon, done performances for celeb clients, and wowed audiences at more than 3000 magic shows.

At first, I was just going to bring Sabrina; Max can't stand theaters. But then, he tolerated that performance in March during his class trip. And he loooooved that band with a guitar player named Max. And so I decided Magic Max would be a great thing to try.

To warm Max up, I had him watch this video:


He was fascinated and kept wanting to see it again. Each time it would end, though, he'd point at the screen and shake his head "Noooooooo." As in, he did not want to meet Magic Max.

I didn't listen.

Saturday, we headed into the city. As soon as we got to the theater, Max started whimpering. I coaxed him into the lobby; the show didn't start for 45 minutes, and it was totally quiet. Especially since Max already had his noise-blocking earphones on.  

Max parked himself on a bench. And guess who dropped by?


Max was psyched; Magic Max chatted with him for a bit and charmed him. After Magic Max left, though, my Max started looking worried again. When the house manager let us into the theater early (it pays to befriend house managers), Max literally lay down on the carpet and wailed. I spoke to him quietly and he stopped. But when the show was about to start, I picked him up and carried him inside as he cried.

The seats weren't completely filled, and I grabbed one toward the back and hugged Max tight. He alternated bouts of sobs with burying his head deep into my neck. A lot of people turned around to stare; I'm sure some were hoping that Max wouldn't disrupt the performance, and I didn't blame them. But I was hoping that once the show started, Max would calm down and enjoy it. I buried my face in his hair and breathed in its baby-shampoo smell.

"WAAAAAAAAAAHHHHHH," said Max, and he started wriggling so he could make a break for the front door. I held him tighter and wondered if I should bring some Mommy Magic next time we attempted to take him to the theater. Like, sedatives.

Scene 1: Magic Max comes out in a mini car and zooms around the stage. Max gets downright hysterical. Dave scoots him out and I stay with Sabrina.

Scene 2 (five minutes later): The door to the theater opens and there's Max, smiling. Beaming, actually.

Scene 3: Max stands on the sidelines and watches the entire show, giggling often. Sabrina was similarly mesmerized.

I don't think I can fully express how relieved I felt. Blissful, too. I knew that Max would enjoy the show if he could just push past his sensory fears of the dark and the unknown, and he did. The show is entertaining for adults and kids; Magic Max is a funny, wry sort of guy. He pulled coins from a little girl's ear (and had some "fall" out of her nose and butt); he did this mind-blowing trick where he guessed the name someone in the audience was thinking of. He juggled. He did car tricks. He borrowed someone's wedding ring and unearthed it in a pile of gift boxes. When Magic Max's stuffed pig, Hamlet, tooled around in a remote-control car, Max decided he wanted to be part of the act; I grabbed him just as he was about to dash onstage.

"Hi, Max!" Magic Max said to Max a couple of times, and Max looked really pleased.

Afterward, Max couldn't wait to get to the lobby, where Magic Max posed for photos and gave autographs.

Then we couldn't tear Max away from Magic Max.

Then we couldn't get Max out of the theater.

Then we couldn't get Max into the car

We bought a magic wand; Max sleeps with it next to his pillow

We also got the DVD Magic In Minutes in which Magic Max teaches kids how to do 12 different tricks. The kids have watched it at least ten times and at night, before bedtime, Sabrina does a magic show in her room for Max. I am not allowed in, but I hear both of them cracking up. Meanwhile, Max keeps saying he'd like to see the show again.

One small step for me, one giant step for Max-kind.

The Amazing Max is running through July 1; to get 10 percent off orchestra seats (rows D-J), click here.

Thursday, May 17, 2012

Treatments for cerebral palsy and other astounding news


In the last few months there's been a spate of studies about cerebral palsy, some of which will blow your mind—in a good way. Max's cerebral palsy is part of who he is, but if there were any way to diminish it and make his life easier, of course I'd want to. These studies give me hope—for Max and other kids with CP, and for babies at risk for it.

Found: a new cause for cerebral palsy. Experts have long considered birth mishaps a prime cause for cerebral palsy—but researchers have found that many cases may be due to genetic abnormalities. The research by Geisinger Health System, published in the acclaimed The Lancet Neurology journal, notes that scientists have discovered six genes that can cause CP when "disrupted." Inadequate oxygen supply to fetuses has long been the most studied factor for CP, the paper notes. Although fetal monitoring is now around to detect issues, and more C-sections are done to avoid difficult deliveries, the rate of CP has not decreased (2 to 3 per 1000 live births)—meaning, there must be another cause. "What we're finding is a growing body of evidence that suggests mutations in multiple genes are responsible for CP," says research scientist Andres Moreno De Luca, M.D., the paper's lead author. "In fact, we suspect these genetic abnormalities may also be the cause of some difficult births to begin with." The article recommends that doctors consider doing genetic testing when kids have CP or symptoms, and notes that there will most likely be an increase in research—and new ways to treat CP.

A drug that could treat cerebral palsy: Anti-inflammatory medication could help change the course of cerebral palsy, a study in the journal Science Translational Medicine finds. Researchers injected the drug into newborn rabbits with cerebral palsy; within five days, the bunnies were able to walk and hop, which they'd previously had trouble with. "This suggests that there is a window of opportunity to prevent cerebral palsy," says Roberto Romero, chief of the Perinatology Research Branch of the National Institutes of Health and author of the study. More research is needed to determine whether this could help humans, and if it can be effective when given beyond infancy.

Nintendo Wii as therapy? Yep. Active video games can help promote light to moderate physical activity in kids with cerebral palsy, finds a new study. The games "provide a low-cost commercially available system that can be strategically selected to address specific therapeutic goals," says lead investigator Elaine Biddiss, Ph.D., of Toronto's Bloorview Research Institute at Holland Bloorview Kids Rehabilitation Hospital and the University of Toronto. Researchers studied 17 kids with CP while they played Wii Boxing, Tennis, Bowling and Dance Dance Revolution, tracking data on their energy, muscle activity and motion. Although the games didn't build endurance or strength, they enabled kids to do moderate levels of physical activity. Experts say the repetitive action involved in active games might spark changes in the brains of kids with CP, in turn improving movement. That is, if their siblings share the Wii with them.


Image/Dazt

Wednesday, May 16, 2012

The secret sauce to my sanity and Mom 2.0


For the record, the secret to my sanity does not have anything to do with the communal shower room at the Versace Mansion in South Beach, even though that's where I'm standing here and it wouldn't suck to have one. You know, in my very own mansion.


Staying sane also doesn't require a visit to this beautiful hotel, even though it seriously helped.


This woman, actually, is part of the secret to my sanity. Her name's Ellen (wahoo!) and she writes over at Confessions of an IT Girl. She's also mom to a kid with special powers and one of the funniest women I've ever met, the kind who give you an incontinence problem.

The secret to my sanity is this: having a passion other than my family. For me, this blog is that passion, and I love discussing what I do with other bloggers and hearing how they spread the word about what's important to them. Last Sunday I got back from the Mom 2.0 Summit in Key Biscayne, and I've been on a high ever since. It's a wonderfully intimate conference (about 400 bloggers), and welcoming to both newbie and seasoned bloggers.


My ride to the hotel: the 2012 Honda Odyssey, with Cecily K of Uppercase Woman and Babble's Mom Crunch in the front seat. Behold the super-wide DVD screen; it can be split, so the kids can each watch their own shows. If we got that car, Max and Sabrina would never, ever leave it.  

If you ever decide to run away from home, head straight to The Ritz Carlton at Key Biscayne  

One of my favorite spots: Rumbar, with its Old Havana vibe. 


One night, we set out to break a world record for the most widespread social network message in an hour (Justin Bieber fans hold that honor). Hundreds of women stood around a courtyard, tweeting the message "You inspire me. #DoveInspired." (If you got that tweet from me, that's why and if you didn't, my thumbs got tired and I'm sorry). That's Emily of The Motherhood and Betsy of Thinking Cap Creative Solutions going at it, above, with Liz of Mom 101 in the background. If we scored, Dove was going to donate $15,000 to Girls Inc. We came close, but the dang Bieber fans took over.

I spoke in a Hot Issues of 2012 panel with Kristen Howerton of Rage Against The Minivan and Samantha Ettus of Personahood; Buffy Wicks, National Operation Vote Director for Obama's re-election campaign, moderated. The conversation centered around advocating for what's important to you, and sharing perspectives through personal stories. Kirsten told of a post she wrote recounting her family's experiences getting denied healthcare, and calling for reform. I mentioned my video about the word "retard" and how it got attention for an issue important to me and many other parents. And of course, we got into a lively discussion about ye olde work/family struggles.

Listening to other speakers at the conference was both inspiring and tearjerker-y.

• "Think about what's pleasurable, not just what's possible," said BrenĂ© Brown, Ph.D., a professor of social work and motivational speaker, talking about what's next for women. She always gives me food for thought and courage, especially when she said "The most connected posts are the ones that make you nervous to hit publish and sometimes you just need to put it out there." (Check out her powerful TED talk).


• "They represent the deep breath that we often forget to take" is how entrepreneur Lee Rhodes describes the handmade glass candleholders her company, Glassybaby, produces. Back in 1998, she had three young kids and lung cancer; dropping tea lights into candles gave her serenity and hope. So far, she's given $911,000 to funding cancer research—a beautiful thing.

• "Whenever you launch something new, you can't succeed unless you're crazy passionate about it, emphasis possibly on the crazy!" said designer Liz Lange, who used to personally answer customer service calls and emails when her company started. Screech if you relate to "crazy!"

• "Companies need to invest in working moms. Even if moms work shorter hours, they get things done."—Brilliance from Kat Gordon of Maternal Instincts in her panel on using social media to make change happen.


• "My mom launched a company"—that's what this little girl's message says. Her mom is Kathryn Tucker of Red Rover, an app that helps you find local friends and activities. As Kathryn spoke of her angst about juggling her business and her family, she teared up and suddenly a lot of us were reaching for tissues. As a working mom, I know exactly what it's like to get caught in that tug of war.


I made some new friends including Charlotte, a mom of five who writes Handmade Charlotte (of course her business card was super-cool); Jessica of Project Night Night (a nonprofit that delivers blankets, books and stuffed animals to kids in homeless shelters); and Melanie of Coupon Goddess, a mom of four (and a very funny goddess). Meeting moms of four and five kids makes your own life seem instantly more sane.  

Mom 2.0 has a rep for awesome parties, and they rocked. At Friday night's White Party, even New Yorkers like me gave up black. Saturday night: party at the Versace Mansion! It's now a private hotel (rates start at $800 a night, though you get your own butler), and as over-the-top as I expected. My lovely date: Jennifer of Life's Dewlaps. My dress: a turquoise MaxMara wrap dress (also Not Black!) that Kimberly Garrett of Plush Fashion Styling helped me pick out. 


A former part of the celeb dressing team at Polo Ralph Lauren, she's also worked with wardrobe designers on Gossip Girl and Sex and The City 2. These days, she lends her expertise to New York City moms (including me)! Now I need to hang out at the Versace Mansion more, because the dress matched the color of the pool.

The 1000 Mosaics Pool  

The main courtyard

The Velvet Lounge, next to the shower room

So there you have it, Mom 2.0 2012: fun, glamour, glitz, information and inspiration. Mom 2.0 2013 will be at California's Ritz-Carlton Laguna Niguel. It seems like a fab place to pursue your blogging passion (and preserve your sanity). And, wow, would I love to meet you there. 

Tuesday, May 15, 2012

And then Max grew up to be a barista

For years, Max has had a table in his room he can write on with an erasable marker. It's a cheap one I got years ago at Bed, Bath & Beyond that I need to replace, because it's too baby-ish for him. Thing is, it comes in handy: Sometimes, he likes to draw on it or practice writing his name. Most recently, he likes to ask me or Sabrina to write out a list of preferred drinks of notable people in his life:

Max drinks chocolate milk
Caleb drinks water
Mommy drinks iced coffee
Daddy drinks hot coffee
Sabrina drinks lemonade

And then, he likes to recite the list, again and again and again. I love it because he's reading (well, at this point he's got it memorized), and most of all because he's articulating words. Lately, he's been trying so hard to say stuff.  

For weeks, Sabrina's sat with Max, wrote out the drinks and listened as he read—an awesome thing. But she's getting tired of doing it, as you might glean here. Max usually does a nice job of speaking the words when she's not speed-pointing.

Ah. Sibling love.

Monday, May 14, 2012

What I've learned about motherhood from my child with special needs


I wrote a guest post for the Huffington Post this weekend, part of a Mother's Day series. They asked me to write about what I know about motherhood from being a mom of a child with special needs. A snippet:

Perfection is in the eye of the beholder. Some people might look at my son and see a child who walks a little unsteadily at times, speaks unclearly and has trouble grasping things. Me, I see a child who miraculously walks, talks in his own way and does his best to make his hands work even though they're often tight from the cerebral palsy. I see the ability in his disabilities. I see Max, a child as perfect as any other—and, at times, as bratty as any other. (Hello: He's a kid with special needs, not a saint.)

You can read all of it here, at Huffington Post. And, yes, I included a couple of classic Max photos, including this—one of my all-time favorites.

If you have a chance, please also check out:

Today is No Mothers Day, Too: My post on Babble Voices about why 1000 women are going to die today, and how we can help.

The God Box: Lessons My Mom Taught Me About Life... After She Died: A beautiful, inspirational post by the author of a new book.

Friday, May 11, 2012

A boy with cerebral palsy walks to his U.S. Marine dad for the first time: a must-see video


If you have a kid with cerebral palsy or another disability and you were told he might never walk, you might know how it feels to see your child take his first steps. Seeing Max toddle from Dave's arms into mine, with a big grin on his face, was one of the happiest moments of my life. I can't imagine how it feels, however, to be a soldier stationed abroad who's never seen his child with cerebral palsy walk—and come home to find that he is.
   

On Wednesday, Melissa C. put this video up on Welcome Home Blog, a site with videos of military homecomings. (Thanks to reader Jenny for telling me about it). As Melissa writes, "When my husband left on his deployment, our 6-year-old son could not walk on his own. He has cerebral palsy. Doctors originally said he would never walk or do much of anyting. While daddy was away, he learned to walk. For his homecoming, we set it up for Michael to walk to his daddy for the first time ever! We kept the fact that he could walk a secret the whole time his dad was gone."

Watching this video took me right back to the day Max first walked; I sobbed after I watched it. I'm so happy for these parents. And if I know anything, I know that boy will keep right on amazing them.


Image: Screen shot from the video

The best Mother's Day cards ever


Mother's Day came early at our house, because the kids were so excited to give me what they'd made. Also, as Dave excitedly noted by phone last night (he's been on a business trip this week), "It's less expensive to send flowers on Thursday!" OOOOOOOOOKAY. The roses are beautiful and it's the thought and counts that all, but I think maybe I didn't need that thought?

Bargain roses still smell as sweet

Max's card made me particularly happy because, well, you know. It said:

I think of all 
The things you do
And then I know why
I LOVE YOU

Everything I do for Max is selfless and unconditional, but it's nice seeing that in writing. Although I thought he loved me for my charm and good looks. 

I also got a Mom's Day plant from Max. With purple flowers, of course.

Sabrina's handiwork, also The Best Mother's Day Card Ever

She went with "You are the best mom in the world!" on her card. I am going to remind her of that the next time she has a meltdown when I won't let her do something. Actually, maybe I should just tape that to my forehead and walk around with it.

So there we were, enjoying Mother's Day on a Thursday night. Party in Mommy's bedroom! I let the kids crash in my bed, and then we played this hysterically weird game where we all took turns pretending we were crying in different voices, and then we jumped on the bed and ate string cheese. It was an awesome pre-celebration, and then I get to sleep late on Sunday. Wheeeee!

Hope you have a great Mother's Day! If you pay it forward to another special needs mom and leave a treat on her doorstep, I'd love to hear about it.

Thursday, May 10, 2012

From my "little things that make me happy" files


I love that he is still able to comfortably fit on top of the kitchen counter. Because for all the years I worried that Max wouldn't grow up and do things soon enough, I now fear he is growing up too fast.

Wednesday, May 9, 2012

Press Here: a supercool app giveaway

The kids have been seeing spots lately. Lots and lots of spots. I'm not worried—actually, I'm thrilled. It's because I got an app to review, Press Here, and Max and Sabrina are fascinated by all the cool and creative spotty stuff it does.
The app is based on the bestselling book Press Here, by HervĂ© Tullet, that's all about using your imagination. Kids pretend that the dots they're pressing, shaking and blowing move around. Of course, the dots actually do move in the app, though the concepts remain simple and imagination-sparking.

I like that the 15 games are not winning-driven—kids can explore, draw and just have fun with blinking, winking, multiplying and colliding dots. They help with hand-eye coordination and encourage pointing, a Good Thing if your kid has fine-motor control issues (or a fondness for iPhone apps so strong, she rolls out of bed and starts playing).


Max is mesmerized, despite the fact that there are no purple dots (still his only favorite color). He particularly enjoyed Studio (drawing with dots that bop around); Sabrina is all about Music Box (where you "compose" your own song by pressing various dots). "You can do whatever you want!" she says of the app. "There's so much stuff to do, it's not just one game." Press Here recently got a rave review from Gadgetwise on The New York Times.
You can get Press Here for your iPhone and iPod Touch (99 cents) or iPad ($1.00), and it's great for kids young and old—Tap Tap has become my go-to activity during my commute home from work.

Yes, I have a giveaway!

One winner will receive a copy of the Press Here book, a code for the iPhone app AND a code for the iPad app. Woo hoo!

There are two ways to enter:

• Check out the iPhone app on iTunes and leave a comment with your thoughts about it.
• Check out the iPad app on iTunes and leave a comment with your thoughts about it.

This giveaway is open to residents of U.S. and Canada until Wednesday, May 16 at 11:59 p.m.; I will randomly select the winner and alert you by email.

Note, you must leave your email if yours is not visible on your blog or your entry will be invalid.

UPDATE: The winner is L3Mom. Hope your kids enjoy the book and apps!

 

Disclosure: This is a sponsored post; I received free copies of the app and a book, but the opinions expressed here are my own.